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Monday, September 29, 2014

I can't believe I didn't post about Spencer's birthday on the blog! I posted on Facebook, Instagram but didn't get it to the blog! I made such a big deal about it too!! So, here is my Ode to Spencer!!

My oldest son! A whopping 20 years old on September 8th. I miss that boy more than anything. I sometimes catch myself daydreaming about the day I get to actually wrap my arms around him and hold him tight! I get teary eyed just thinking about our reunion!

I use to think I wanted a houseful of girls and when I found out I was having a boy, I remember thinking...huh? I'm not a boy mom! Why would God send me a boy? But boy oh boy, I am so glad he sent me two boys! They take such good care of me. They are both so kind and sensitive to me and Shelbie.

Spencer has been such a blessing to our family. He adds to our wacky sense of humor and together, we have so much fun, no matter what the circumstances. He has a way of breaking the tension. Here are some of my favorite pictures of Spencer through the last two decades...

2 months old

3 years old

8 years old

13 years old

The family that gets sick together, stays together!

The nurse told Spencer to put the hair net over his head...so he did! Not quite what she had in mind. On his way to get his gallbladder removed on his 16th birthday.

Spencer doesn't just move mountains, he jumps them and whatever else is in his way!

Always ready to shock the crowd with his humor

Senior Tribute at Church. Spencer made that long board and painted the art!

Goofing around with his sidekick Sam

Jackson Hole 2013

We were at a Biochemical Geneticist appointment and the staff was so grouchy. Shelbie was crying and frustrated so Spencer saved the day. I can't remember what he was saying, but some running commentary that had us in tears, we were laughing so hard. Made the rest of the 3 hour appointment bearable!

Spencer on his Wish Trip. Getting ready to see Jimmy Fallon in New York City! November 2012

Uncle Howard, Sam and Spencer made it on the jumbo screen at Times Square!!! So cool!

On our way to Seminary Graduation

His mission picture

My favorite picture of all. A hardworking missionary.

I am so proud of Spencer. He has lived a fearless life. Even going against the advice of his doctors, he chose to serve a full time mission for the Church of Jesus Christ of Latter-day Saints. He knew that if he dedicated his life to Heavenly Father, he would be blessed with health and strength while on his mission. He has always had faith that everything will work out. He has often told me out of all the experiences he has had, serving a mission has been the highlight of his life.

I don't think I've heard him complain once about his mission. Even when his first apartment was in a double car garage with no plumbing , no closets, no kitchen and a string of Christmas lights for light. He loved it! He loves working for people, serving them, teaching them and loving them.

So, it was a big birthday for him. I sent him a box of balloons, confetti birthday banner, messages in bottles and cake in a can! It was so fun to make! I had a blast getting his box ready!

Sunday, September 28, 2014

It's amazing to me how quickly I can change my mind. How quickly my energy can go from octane levels to mostly empty.

I was all ready to get going on some of these appointments for the kids Sam is late in getting his bone marrow biopsy done, his lung function tests done and another check up on the scarring on his retina. I was going to have that all set up for this week since it's potato harvest and they are out for school.

This weekend, I was going to work on Shelbie's stuff for our Seattle appointment.

None of that happened...no energy! Since I am the queen of denial...putting it off seems like a perfectly rational thing to do!

My friend, whose little girl has Dyskeratosis Congenita or at lease a clinical version of it, had a bone marrow biopsy nearly 3 months ago. She is not doing well at all. From what I have read, she hasn't really had a decent day since the transplant. Her organs are having such a hard time, I guess from the chemo regimens. It freaks me out.

I think that is why I am all of a sudden dragging my feet on the bone marrow biopsy. Sometimes, not knowing how things are progressing can be a blessing because you don't have to make hard choices. My friend had to make a hard choice. Her daughter's telomeres were getting dangerously short and that makes for a very tough transplant situation. Transplanting would give her a shot at a longer life, without it, she would surely die. They weren't given much time as the window for transplant success was closing. There wasn't a good option.

I like good options. I like clear cut answers. The thought of someday having to decide to transplant my kids makes me sick. I'm glad they are old enough to shoulder in the decision. Then, there is the part that they have no literature on the course of the disease since there are only three kids in the entire world with our mutation! My boys and one other young man. It's a lot to digest so I take it in little bite size pieces...like a fancy appetizer I stab with a toothpick.

The truth is, no matter what the future holds for my kids, They will live out their numbered days. Spencer said in a letter just a couple of weeks ago that he knows that the only reason he can get up every day and do his work is because he is being sustained by Heavenly Father. He knows he should be feeling much worse than he is. That is reassuring to me and that his work will get done despite what a bone marrow biopsy says. The same goes for Shelbie and Sam.

So, it all comes down to faith and hope. I have set Wednesday as my goal to have all our appointments set up for Sam. I will return and report!

Friday, September 26, 2014

One of my SDS friends posted this music video from One Republic called, I Lived. They showcase a 15 year old boy with Cystic Fibrosis.

It was a pretty powerful message. Not only that, when the boy starts talking, that congested echo from diseased lungs, flooded my mind with all sorts of memories from my friend Dana who passed away of CF. It's amazing how a voice can bring back so many great memories. Probably the best memories of my life.

I sort of had to choke back the tears as I watched the video. I could see my own boys in this young man's life. My boys have done it all! When they are called home, I know they will be able to say they lived.

Now, if I too could say that...we'd be doing great! Here's to another day of trying.

Wednesday, September 24, 2014

In three weeks, we head back to Seattle for a new Immunology Appointment.

This whole year, I have been very unprepared for every single appointment and I don't want that to happen again. So, I'm getting started early!

Between the research I'm doing for my friend, my research for Shelbie and finally researching the disease the boys have. I've been a busy little researching bee! I love researching. It is one of my passions, especially when I actually find answers.

A little update on my friend. She does not have Mito she has a genetic mutation called MTHFR. It's rare and strangely enough, when I found that buried in her genetic report, I already knew something about it!

As the story goes, last year, I had a friend send me some articles on the MTHFR gene. She felt it fit my kids. I wasn't so sure. Something about it didn't feel quite right and I simply filed it away with my other resources. It's a funny gene because people call it the 'Mother-Fer' gene...not lying! It is a quite a bad disease so I guess the name is fitting. I was able to find a lot more information on it and start making suggestions on how to treat it, what specialist to get to etc. So, hopefully, what little I was able to give her, will help her get on the road to a treatment at least to help the symptoms. There is no cure but it can be managed, fairly well even, with nutrition. Already, she has been able to move more, just a tiny bit.

It was just another reminder to me that God is in the details. We are all connected. He knew last year that somehow, I would be the one to get the information needed into my friend's hands. Strangely enough, when I got the literature, I still had not met my friend who is sick!!! How's that for amazing?

As for Miss Shelbie, I am starting a spreadsheet for her and I am going to put every symptom into groups according to body systems. So for example, all her neurological symptoms will go under Neurology. Then, I will classify things as autoimmune, autonomic, acquired, etc. For the things I don't know, I will clump those together. I am hoping by mapping it out this way, we will be able to see a broader picture of how everything is related.

I'm still having the hardest time wrapping my mind around the fact that she doesn't have Dyskeratosis Congenita. She is the reason we started looking there in the first place, three years ago!! I never questioned that disease for the boys! It's hard to believe that my kids have two completely different diseases, totally unrelated. If you look at the odds of that, combined with Dyskeratosis Congenita, we have WAY better odds of winning the lottery...the big one!

I'm trying to send out some good vibrations to this new doc we will see. I look at his picture every week, sending smart thoughts and an open mind his way! I know, that isn't going to do anything but it makes me feel better!

Sunday, September 21, 2014

Friday night, after some late meetings in the city, I decided that instead of rushing home to keep working in an empty house...on a Friday night...I would stop at my favorite book store, Barnes and Noble. I really can't remember the last time I just sat. I didn't pull out my phone, I didn't pine for my laptop. I didn't have a stack of my favorite magazines. I just sat with my first, Skinny Starbucks Cocoa with Salted Caramel of the season. I'm pretty sure the girl that made my cocoa wondered what the point was to ordering it with non fat milk but adding caramel and whipping cream. I don't know...go figure! It's how I roll.

I actually noticed, as I sat, that I was breathing. I don't usually notice that I breathe. Mostly, I feel like I'm always holding my breath, about to turn blue.

I noticed that my shoulders were sitting up around my ears which might explain why people were staring at me. I tried to shake out the tension and put them back in their place.

I noticed that my mind was slowing down just a bit instead of racing for some finish line that keeps moving just out reach.

Wow! It was a pretty big moment for me. I realized what an incredibly hard year this has been. I don't usually notice how hard things are until I stop the madness for just a minute. It hasn't just been hard for me, but my whole extended family. We've dealt with a lot of hard things, all of us. I have seen that we all just kind of stumble along, trying to keep not only ourselves but everyone else together. We did alright though. There may be some emotional scars left but, we are in one piece from a family stand point.

For my little family...when I picture us in my mind, I see some pretty torn up and battered people, hobbling along trying to keep smiling. There are glimpses of the toll life has taken nearly every day now. It use to be we would stumble but jump up and get on with getting on. We didn't notice the bruises from the day at all! Not this year. We spend a little more time trying to get back up, not because we choose to, just because we are so tired.

I feel guilty about this. Maybe even a little shame. I know I should be setting the tone for our day and right now, I'm slightly tone deaf and our tune is off, but, then I remember these two quotes by Dieter F. Uchtdorf,

So, I noticed, while I sat in Barnes and Noble on a Friday night that I have slowed down significantly. I guess there is nothing I can really do to change that right now. When you're tired you're tired. Just keep thinking I should care more that I'm falling apart but I don't.

I sat some more. I watched the people around me, wondered about their own stories they could tell. I listened to a man discussing the Book of Proverbs from his open Bible, with a friend on the phone. Interesting. I Finished my Skinny Hot Chocolate and kind of enjoyed being a lonely stranger and in a store full of people who had no preconceived notion of who I should be, what I should be doing, how I should be acting. They had nothing to judge me on, especially now that my shoulders were back were they belonged!

Saturday, September 20, 2014

I'm not super happy about the state of my blog. I hated to have to go private but considering the crazies that come into my life from time to time...I was getting a bit freaked out.

My blog is something I really, really enjoy. I enjoy blogging so much, I use to have 5 blogs! Now, I'm just down to 3. The future of this blog is in flux...again!

I am toying with the idea of just going public again. If the crazies want to get me and my family, a private blog isn't going to stop them. If you hate someone, you just pretty much hate them.

The other idea I am considering is changing the name, the address and keeping it public. If I do that, it's going to take some time for the crazies to find me again because they will keep searching for the old address...

Finally, just scrapping it altogether. This doesn't feel like a great option but...I am going through a mid life crisis so anything could happen. ;)

I think this quandary is really just the standard theme I've been feeling lately...restless. Anxious. Maybe anxious is a better word. Not really sure what it's all about but change is in the air.

Friday, September 19, 2014

It hasn't been a bad week. Busy as usual but I've been able to stay above the current so that's good. I think things will start slowing down for the fall as several of my jobs start coming to an end.
Here are some highlights:

* Shelbie survived IVIG like a champ! NO hospital trips this time! Still having major bleeding problems. This picture, I like to refer to as Lettuce Petechiae...That is not it's official name but just to give you an idea of how easily she starts bleeding, this damage was from carrying in a grocery bag with lettuce in it, Kale to be exact. Yep...there's a problem. It would sure be nice if we had a doctor who would be willing to step outside the box and give a diagnosis the old college try.

* Sam has had a crazy time at school. I'm so sick of teachers. They are so annoying to me. All I hear is complaining from a huge majority of them. They complain about going back to work. They complain about not getting a snow day. They complain about their crappy students. They complain about the tests, the government, their pay, the parents...on and on. Now, before everyone freaks out and has a melt down...I'm not referring to all teachers!!! I have a million teacher friends and I'm sure they are awesome but Sam has two teachers who are so cranky. I'd just like to ask them what they think they are accomplishing by being cranky. Of course, I reported these stories on Facebook because I thought it was ironic and frankly, hilarious but of course, this town had to get all defensive and blame it on poor teacher pay, parents complaining, naughty kids, whatever...really, all it was, was a funny story about two teachers who did some dumb things! Just two teachers...not the whole district, not the whole school, not every living teacher...just two...Sheesh!! Needless to say...it merely escalated my sarcasm, on Twitter of course because my Facebook friends lack humor apparently.

As the story goes...we had a levy pass recently that allows the district to add 3 'Meaningful Instructional Days' at school. So happens, the night I got the email on this, Sam reported that in one class, they spent the entire time watching a You Tube video a teacher had made about the class room rules. For homework, in this HISTORY class, not a writing class, he had to write about the three rules he felt were most important. One of the rules was...You can use a hall pass, but if you do...you will lose grade points. So dumb! What are we...in 3rd grade? By the way, Sam is in grade 11.

The second story was in a different class. Sam finished his work early so started doodling quietly. The teacher got angry and said he needed to be reading something so she handed him the newspaper. When the bell rang, as Sam was preparing to leave, she informed him that he can't just expect to read the newspaper when he finishes early, he needs to read something "Educational, like Harry Potter." Harry Potter? Are you kidding me? Since when was he more educational than the newspaper? I guess if you are going into Wizardry, then it could be worth your time!

Now...We apparently need three more meaningful days like this that cost taxpayers...a few million dollars. Awesome!

*Enterovirus D68 is officially here. They say it just got here but what people fail to understand is that Hand Foot Mouth disease is in fact one of the facets of Enterovirus D68. That in itself has been running rampant through our town so really, we've been fighting this for weeks now. So far, we have been healthy. The kids had colds but nothing complicated. I remember when Shelbie was little, she had the worst case of Hand Foot Mouth the doctor had ever seen. There wasn't a spot in her mouth that wasn't covered in sores. She would just sit on the couch with saliva running down her face because she couldn't even swallow her own spit. She was like this for two solid weeks.

* Finally. I was invited to submit my book for review and critique by Victoria Marini of Gelfman Schneider Publishing in New York!! Long story short. I wasn't going to but the last day, I decided I was curious enough to see what a real Literary Agent had to say about my writing. She might shred me to pieces...But, I'm ready to face that. She might like it too...I'm not ready to face that!

The night I submitted it, I had the most horrible dream. A police car was driving around the perimeter of my house. So close to my house, he could reach out and touch it. He had his spotlight shining in through the blinds trying to see in. I was crawling on the floor, hiding under furniture, trying not to be found! I think this might have something to do with submitting that book. I'm feeling a little vulnerable to say the least.

Sunday, September 7, 2014

Well, I have had this nagging feeling that our good luck is running out. Now, that may sound hilarious coming from the girl whose only luck comes in the form of bad.

The one thing we have had good luck with is the fact that we have not had to deal with many acute health problems over the past couple of years, or maybe I have just forgotten. We haven't had many high fevers or bad infections. There's something about the acute problems that can be harder than the long standing chronic ones.

There are so many horrible viruses going around and the number of sick people is huge! I try to emphasize hand washing but it's time for some more reminders. Colorado had 900 children check into the hospital in the past two weeks because of a horrible virus. I really hope that Spencer can avoid this one! It sounds like the winter is shaping up to be a doozy! I have this hunch, we may feel its effects this year.

Thursday, September 4, 2014

Three weeks ago, I stumbled onto the 100 Happy Days website. They challenge people to find one happy thing a day and hashtag it on Facebook or Instagram and their website. For some reason, this moved me! They claim that only 71% of people can be happy for 100 days. It felt like they were challenging me! So, without really thinking...I jumped into the challenge.

I was so excited about it, I dragged a few unassuming people in with me!

It took all of two days for me to realize this was going to be a harder challenge than I thought it would be. If you think about it for two seconds, how hard is it to come up with one happy moment a day? Doesn't sound too hard but trust me to over think something, including happiness!

What is happiness? All of a sudden it seemed so trivial. I had no idea what kind of happy moment I could possibly post. I stumbled through the first two days but really, it seemed so forced and superficial. I posted a picture of a llama. He made me smile but I can't say for sure that I was happier in life for having seen him.

One evening, shortly after I started the challenge, Sam and I were driving and I asked him if he thought I was a happy person. He said, "Yes!" Then, he asked me if I thought he was a happy person.
"Well, I think you are happy as long as you are doing something but really, I don't think inside you are happy. I think you are scared and sad and maybe even angry."
His eyes pierced through me! "Am I wrong?"
He quietly shook his head 'No' and turned to look out the window. I was not prepared for what he said next, "I'm sorry."

I'M SORRY!?? What an interesting choice of words that completely sums up the world's view of happiness! When it comes right down to it, I don't think we are allowed to be unhappy! People just want us to be happy. They don't want to hear about your problems. They don't want to see you down. They don't or can't deal with that.

I occasionally post on Facebook, just random stuff and nothing really jars people too much but it's interesting to me that when I posted the Llama, I got more comments about that than anything and not on Facebook but to my face! Lots of people all said the same kind of thing..."It's so nice to see you so happy!" or "Wow, it's great to see something happy on your timeline." I felt ashamed and wanted to run away from my very hard life! How dare I not be happier! I was mad at myself. I felt guilty that I let my dying children squelch my happiness and zest for life and living!

But at the same time...How seriously messed up is that? As if a llama changed my life but that's how people were acting! Like all of a sudden, I had come to my senses! The truth is, I haven't been any 'happier' the past three weeks than I usually am!

Now, I really want to quit the happiness challenge because it means nothing to me and happiness has become so shallow in this messed up culture of tweets and 140 character posts just because we need to make ourselves look good, better than we are. Happier than the next guy. Happiness has become nothing more than filling our life up with things, stuff, superficial stuff that fills the empty voids we can't admit exist.

Ahhh, the quandaries of life.

I told Sam that he had nothing to be sorry for. I appreciated his honesty. He then said, "It's just that, I hear the doctors tell me that I may not live very long or at least have all kinds of cancer but I don't feel like I'm dying but what if I really am. How am I suppose to act? Am I suppose to be happy about it? I don't know how to be, I just need someone to tell me how to be."

Very wise boy...I wish I had a wise answer for him...Just be. Just be what comes up each day Sam. Just be you. Be happy, be sad, be scared, be joyful, be smart, be tired, be real and be true...That's all you can expect to be and it's okay! Whatever that is for the day...it's okay.

Life is tricky for us but I'm learning to care less about what the world and my 'friends' expect from me and just Be...Happy or not.

Wednesday, September 3, 2014

Last week, I went to Book Club like I do just about every month. I've been going since it started in 2000! A lot has happened in 14 years.

Book Club has evolved into something a little more than just reading a good, or bad book for the month. It's more of a support group. Book Club is made up of 5, use to be 6, of the strongest women I know! Each one of us has been through a horrific tragedy of some kind, except for me. My stuff isn't really tragic, it's just chronic. We have been there for each other through thick and thin. Through the passing away of husbands and children. The weddings, the babies, the transplants and all the other happenings of life you can imagine. We go through it together in a way. I guess what I'm trying to say is these women are no stranger to hard times and difficult trials.

They have been through it all with me too!

Each month, we always take a little time to catch up on each other's life but last week, I seemed to monopolize the time. I guess so much has happened in 8 weeks that I haven't talked about, blogged about, advertised on Facebook, so when I started talking, it was like words just backing up in my throat, hardly able to escape fast enough. I just kept pouring out the problems, thick! Two hours later, I felt emptied.

As I drove home and later, laying in bed I was struck with how much has happened in 8 weeks. That night, we really only covered one subject but in 8 weeks I have survived...

Major surgery to replace bones with prosthesis

6 weeks of vertigo

A week of Shelbie in the hospital

Almost losing Shelbie

Losing two major jobs

Threats to my family

Criminal Court

An impromptu trip to Seattle

Children problems

Two doctors bailing out on us

One flood, three major water leaks

Then, there's just the day to day balancing of work, kids, back to school, balancing a budget, paying bills, making meals, cleaning the house, working at the temple...and the list goes on.

All of a sudden, I felt so overwhelmed! Like I could hardly breathe. No wonder I am tired. It's not really good for me to inventory life like this, it's not really even good for me to talk about it because it just seems so unreal!

I look at the world around me and their summer was filled with trips, fun, family time, one joyful moment after the next and I have to admit, I wondered what I ever did to deserve this! I also felt a little bitter and that made me extra tired. On top of that...I have been really missing Spencer! I've done so well all year but what I wouldn't give for a hug from that young man.

Then, all those feelings I hate to admit, were dulled by the reality that those ladies at book club really saved me that night. They are all so wise and they know how hard life can get. I don't know how 14 years ago, I came to be on the list of book club attendees, but I must have done something right!

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"For a small moment have I forsaken thee, but with great mercies will I gather thee...I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer...For the mountains will depart and the hills shall be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.

Oh thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires. And I will make thy windows of agates and thy gates of carbuncles, and all thy borders of pleasant stones...great shall be the peace of thy children. Thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee." 3 Nephi 22:7-14